I am struggling with my emotions about my husband who has dementia.

[Kas 0103]

I empathise! I worry all the time that Im harsh or impatient and I feel like crying but the tears wont come. Today was awful-the loo was blocked and before I could sort he hoiked it all out and placed it on the seat and sink. I admit I shouted! He hung about looking worried and I sent him away while I cleaned up. I was emotionally drained and fell asleep on the sofa afterwards. When I woke he said “I love you you know”. I feel a complete witch and so sad. I cant stop responding emotionally somehow

I’m the same! I’ve read the books that say you should just deal with whatever comes your way and be positive, which I can do on a good day, but on the others… Hmm! Always makes me feel bad afterwards, if I’ve shown my irritation, but I have never claimed to be a saint… Just a normal human being who cannot go around being Sally Sunshine everyday.
However, I have learned from experience that disposable gloves are the way to go, and I have done things I could never have imagined I would be capable of doing! Water based baby wipes are also very useful, but you probably know that. One positive is that I no longer bite my nails - my ex nurse sister in law told me it stopped her too - so it’s an ill wind and you have to take the positives where you find them! 😂

 

[Mydarlingdaughter]

It’s one of the worst things. Please give yourself permission to reach out to as many people and services as possible. It’s an impossible burden to carry alone.
The Alzheimers Society have a telephone helpline too, have you tried calling them?

 

[Izzy]

The Alzheimers Society have a telephone helpline too, have you tried calling them?

You’ll find the number for the Dementiam Support Line here-

Contact us

Find out how to get in touch with Alzheimer's Society by phone, email, post or online.

www.alzheimers.org.uk

 

[truggles]

I feel for every one stories . Reading them has made me feel less guilty for the times I sit and cry for my recently diagnosed husband who has mixed dementia at 70 years young. I felt guilty having these moments because he is the one suffering , and I should be the one supporting him and raising his spirits. If he can't think of a name or place he wants to talk about he looks to me for the answer when unfortunately I dont know what he's trying to say and then gets very cross with me . I find it all a bit scary , I know theres going to be worse times a head .

 

[TheNightshade2021]

I realized in the last few days that I have been in some kind of state of shock since my husband's diagnosis in March. It took some time for it to sink in that the lovely life we shared, and which I took for granted, is never going to be the same again and that I am grieving for that loss. I don't cry as much now but I feel as if my brain is paralysed, unable to make plans or organise the simplest of things. I seem to be in limbo with a to-do list that never gets any shorter. Everything is now on my shoulders and everyday problems seem a hundred times worse than they probably are. I have been advised to get help for myself and get out more but am just daunted by the organisation that would take. I do recognise that I am very slowly learning to cope with all this, but am too scared to look into the future, so just take one day at a time.

I totally empathise withthis. Its as though your life is turned upside down. When I think Ive solved one problem another pops up! You never get ahead really. I still work PT and if I need to go out elsewhere OH comes too. Its very hard to cope with x

 

[Veritas]

I feel for every one stories . Reading them has made me feel less guilty for the times I sit and cry for my recently diagnosed husband who has mixed dementia at 70 years young. I felt guilty having these moments because he is the one suffering , and I should be the one supporting him and raising his spirits. If he can't think of a name or place he wants to talk about he looks to me for the answer when unfortunately I dont know what he's trying to say and then gets very cross with me . I find it all a bit scary , I know theres going to be worse times a head .

So are you, and if my experience is anything to go by he is generally much less aware of the ground he's lost than you are. So don't feel guilty. All any of us can do is our best, and some days are easier to deal with than others. I'm not a saint and never have been, and I refuse to beat myself up when the patience wears a bit thin.

My PWD ignored our wedding anniversary recently (as he did last year) because the date no longer means anything to him. I didn't tell him, because it didn't feel like a kindness to rub it in that he had forgotten, but it's certainly lonely. It's all of a piece with one of the earliest signs of his dementia (I'm thinking fifteen years or so ago) being a certain emotional disengagement from me and others. Most of the memories that surface when something he's read or heard resonates with him relate to his childhood and very early adulthood. It's almost as if we never married or had a life together, although the children are very important to him.

 

[Pork Pie lady]

I feel for every one stories . Reading them has made me feel less guilty for the times I sit and cry for my recently diagnosed husband who has mixed dementia at 70 years young. I felt guilty having these moments because he is the one suffering , and I should be the one supporting him and raising his spirits. If he can't think of a name or place he wants to talk about he looks to me for the answer when unfortunately I dont know what he's trying to say and then gets very cross with me . I find it all a bit scary , I know theres going to be worse times a head .

When my husband struggles for words I encourage him to describe what he means or ask questions that I think might help. For a person I ask things like man or lady and old or young. With food I might ask things like is it hot or cold, sweet or savoury. He once said he was hungry and asked for sweepings with rat poo. By a few gentle carefully chosen questions and suggestions helped by knowing him well I managed to work out he meant oats with sultanas.

Of course I realise that for some the questions themselves would only add to the stress so it wouldn't work for all.

 

[Lostinthisdesert]

Can’t deal with the loneliness it’s killing my spirit. Living with someone who doesn’t speak or acknowledge your existence. You feed dress care direct someone who isn’t there its soul destroying. Just want some love and affection with the husband that has gone it’s a slow decline which eats at you every day . Feeling lonely and sad all the time 😞

I realized in the last few days that I have been in some kind of state of shock since my husband's diagnosis in March. It took some time for it to sink in that the lovely life we shared, and which I took for granted, is never going to be the same again and that I am grieving for that loss. I don't cry as much now but I feel as if my brain is paralysed, unable to make plans or organise the simplest of things. I seem to be in limbo with a to-do list that never gets any shorter. Everything is now on my shoulders and everyday problems seem a hundred times worse than they probably are. I have been advised to get help for myself and get out more but am just daunted by the organisation that would take. I do recognise that I am very slowly learning to cope with all this, but am too scared to look into the future, so just take one day at a time.

This is so much like what I am going through! It is so tough. Let's hold hands (virtually) as we struggle on.

 

[Izzy]

Thinking of you all and wishing you strength. 🤗

 

[Susannah10]

Hi my husband is in a respite centre awaiting placement in a nursing home. It torments me to see him there as he is hardly ever clean. He has been violent and often refuses care. I was meant to have him home after 1 or 2 weeks but the doctors say it is a bad idea. They think he needs 24 hour care. Over 9 months he turned violent and I did not sleep much. He kept trying to smash his way out of the house. I kept taking him out but it didn't make much difference. Deep down I know I would struggle if I brought him home but I miss him so much. I am visiting every day to help with his care but it is an hours drive away. How does everyone cope with the transition from home to care home.

 

[canary]

It takes time @Susannah10
Your head knows you cant cope and a nursing home is the best place, but it hasnt yet reached your heart
xx

 

[Spotify]

can

I empathise! I worry all the time that Im harsh or impatient and I feel like crying but the tears wont come. Today was awful-the loo was blocked and before I could sort he hoiked it all out and placed it on the seat and sink. I admit I shouted! He hung about looking worried and I sent him away while I cleaned up. I was emotionally drained and fell asleep on the sofa afterwards. When I woke he said “I love you you know”. I feel a complete witch and so sad. I cant stop responding emotionally somehow

please don’t feel that about yourself it is not you it is this disease the sadness is overwhelming. I didn’t think it was possible to cry so much but that is not a bad thing it is an emotion we need to use You are doing your very best for your husband please take care and reach out to people I have made a lot of friends who were strangers they are there for you to listen and not to judge you .be kind to yourself no one but you knows or understands how you feel .GOD BLESS

 

[MikeFB]

In common with so many of you I also share your mixed emotions and take comfort in knowing we are not alone. I am 90 and am the sole carer for my wife of similar age who was diagnosed with Alz. 4 years ago. . We have been married for 66 years. There is hardly a day now without despair, when something triggers a situation resulting in utter conflict
and/or remoteness from one another. I constantly ask myself how much longer can I cope with this situation knowing only too well that it can only get worse.
Inevitably I question whether now is the time to seek some help, especially mindful that I need to look after my own well being. But what sort of help I ask, seeing that we live alone and I am being encouraged to remain active for as long as possible. Any thoughts ?

 

[sdmhred]

Hi @MikeFB

How difficult for you at present. At 90 you would be expected to put your feet up and stay active only in areas you choose!

Carers can come in and help with meals, housework and personal care for your wife. Would those sorts of tasks be useful to your situation?

Has your wife had a SS assessment and a carers assessment for yourself? Both can be useful but you can also organise carers yourself if you are going to be self funding.

Do let us know what sort of help you might benefit from and others may have more experience to share.

 

[Veritas]

In common with so many of you I also share your mixed emotions and take comfort in knowing we are not alone. I am 90 and am the sole carer for my wife of similar age who was diagnosed with Alz. 4 years ago. . We have been married for 66 years. There is hardly a day now without despair, when something triggers a situation resulting in utter conflict
and/or remoteness from one another. I constantly ask myself how much longer can I cope with this situation knowing only too well that it can only get worse.
Inevitably I question whether now is the time to seek some help, especially mindful that I need to look after my own well being. But what sort of help I ask, seeing that we live alone and I am being encouraged to remain active for as long as possible. Any thoughts ?

The simple answer is - yes, it is time to ask for some help. Even if you are self-funding (or, rather, your wife is) getting a social services needs assessment for her and a carer's needs assessment for you is worth doing. For one thing, these assessments can identify what sorts of things could be offered. For another, it establishes a baseline for your wife and means that social services do know about you both, so that they can respond faster if things get tricky later on.

Bear in mind that it is absolutely typical of people with dementia to deny that any help is required at all. The reality is though that you do need it because the alternative is to carry on as you are until you fall over. This is not good for either of you. You don't say if you have any family nearby who might be able to support you, but even if you have, at your age and four years in after diagnosis, you need backup and you need it soon. This will allow you to get out and about a bit, and go a long way towards keeping yourself up and running.

Just to add - it's the loneliness of it all that gets to me most. I can (just about) hack having to do pretty much everything (and undoing nonsense as well) but the loss of meaningful companionship is really hard to take. And we haven't been married anything like as long as you.

 

[Chizz]

Hi @Mrs Humphrey and @annieystrad and @TeddyBear77
I empathise with all you are going through, as do many other users of this Talking Point. And using the Talking Point does help to lessen the feelings of being alone and lonely because there are so many others who are experiencing very similar situations. It's 6 years now since I became of full time carer for my wife, so I'm only a beginner. My OH and I have only been together 56 years, and I wanted it to continue as it used to be - just a dream!
As you know, the difficult times, the difficult things your OH says or does are the illness talking and not your OH as he once was. Its hard, but the only way to less misery is the acceptance of the position. Your OH can't change, so you have to adapt to the new circumstances, even though they aren't wanted. Your OH, in his suffering now needs you more than ever. Losing your temper here or there is quite normal, we're human, and being a carer usually means you do what you can, but one can't be an angel.
There are 101 little (and big) things one misses is this situation (ie, having a conversation, doing things together, etc)
Do keep family involved, and get them to help where you can. It will help their understanding of both your OH and you and your position, bearing in mind they will feel loss as well. Keep up contacts with your friends.
If you haven't had one, then consider a care assessment and a carer's assessment by Adult Social Services, or if you have this, then does it need reviewing and updating?
Make sure you have the LPoA in place if you haven't already. Make sure you have claimed all that you can (Attendance Allowance, discount on Council Tax, Blue Badge, etc)
Arrange respite sitters, if appropriate, to allow you to have a mental break.
The emotional investment already made with your OH, the marriage etc, is what manifests itself in the pain, the guilt, the anger, the frustration and grieving you are suffering.
Posting is cathartic. You need to be fit and healthy to look after your OH, so look after yourself.
Every day you will need some determination and strength to carry on. I wish it to you in abundance.

 

[MikeFB]

Hi everyone - your kind thoughts are very much appreciated and I welcome the opportunity to share our experiences.
Despite my age I do manage to keep fairly active, still playing tennis would you believe, and engaging in art being my other hobby. Fortunately, unlike many others, I am not involved in the many physical duties required of a carer such as washing, dressing etc but for how long it remains to be seen. My problem is one of emotion and stress brought about by my wife's total loss of understanding and lack of empathy which manifests itself in her behavior towards me. Hardly a day passes without this irritatability and contradiction happening which is so uncharacteristic of her - and saddens me no end. Therefore my cry for help has less to do with the physical side ( for this moment at least ) and is more concerned with how best to cope with the emotional strain. To that end I am seriously considering seeking professional help from a specialist therapist ( self funded ) Sadly I have no family nearby to share these intimate thoughts so welcome this forum to express and share these feelings.

 

[canary]

Hello @MikeFB

Therefore my cry for help has less to do with the physical side ( for this moment at least ) and is more concerned with how best to cope with the emotional strain.

Im not sure there is any good answer to this. The problem is the loss of the relationship that dementia has stolen away and cannot be brought back to the way it was, which is what we all crave.

I tried counselling, but the counsellor had no idea what it was like to care for someone with dementia and chided me that everything I did revolved around OH. I felt like shouting - well yes, of course it does! Would you be saying this if I were a single parent of a toddler and my life revolved around them? Having someone who understood about dementia may have helped a lot more, of course.

I think different people develop different strategies to deal with it. Mine was to step back emotionally. I used to pretend that I wasnt his wife and I was actually a carer and he was my client. I was so hurt by the things he said and did that I blocked it all out - stuffed the hurt in boxes, chained them up and hid them in the cellar of my mind.

Im not sure its a good strategy. Hopefully others have better ones.

 

[Veritas]

Hi everyone - your kind thoughts are very much appreciated and I welcome the opportunity to share our experiences.
Despite my age I do manage to keep fairly active, still playing tennis would you believe, and engaging in art being my other hobby. Fortunately, unlike many others, I am not involved in the many physical duties required of a carer such as washing, dressing etc but for how long it remains to be seen. My problem is one of emotion and stress brought about by my wife's total loss of understanding and lack of empathy which manifests itself in her behavior towards me. Hardly a day passes without this irritatability and contradiction happening which is so uncharacteristic of her - and saddens me no end. Therefore my cry for help has less to do with the physical side ( for this moment at least ) and is more concerned with how best to cope with the emotional strain. To that end I am seriously considering seeking professional help from a specialist therapist ( self funded ) Sadly I have no family nearby to share these intimate thoughts so welcome this forum to express and share these feelings.

You may find that you are eligible for 'talking therapies' on the NHS - ask your GP. However, the point @canary makes is absolutely right - people who've not been there generally just don't get it - so there is a bit of pot-luck involved. That said, a lightning conductor is a useful thing and a whole lot better than bottling it (the grief, frustration, boredom) all up. Whatever you do, keep going with all those very positive activities, and be ruthless in defending them from being overtaken by your wife's needs. At your age, the very least you can ask for is that much of the practical burden be shouldered by others.

 

[sdmhred]

I wonder if you have a carers organisation local to you @MikeFB?
They may well be able to signpost you to talking therapies with an understanding of dementia. I agree with @canary that is crucial - I tried v early on in my caring journey through work but the lady allocated to me clearly had no idea.

I do have a friend who is a counsellor and I am happy to ask her how you can perhaps navigate that issue if you would like.